I'm grateful to my diabetes!

Diabetes is a burden, a nuisance and feckin' depressing. But it shouldn't be all of those things all of the time.

You probably think I'm "cracked" when I say that I'm grateful to my diabetes. Let me explain;

There are a number of little things that I'm grateful to my diabetes for and the coolest one is that when I was pregnant with my babies I got loads of ultrasound photos. Seeing your baby on the ultrasound monitor is so "awesome" and pregnant women without diabetes in Ireland are lucky if they see the ultrasound twice in the whole nine months. I got to do it at least 8 times with both of mine.

Another little thing I'm grateful to my diabetes for is my weight - it hardly ever changes because I have to keep track of my carbs. Most of the time my weight never increases. Unfortunately, I would like it to go down by about a stone but I'm truly grateful it's not going up.

A big reason I'm grateful to diabetes is how it has enabled me to broaden my horizons as a person and made me stand up for myself in order to take better care of me. How this came about is a bit of a story - please bear with me.

Before 2007, I was the type of person who sat at the back of a room and listened. I would never in a million years speak up in a crowd. And I had never organised an event or even people.

In the 9 years after my diagnosis, I did what I was suppose to do to take care of my diabetes. I didn't ask questions about why I was doing all of these everyday tasks and how they were making my life better.

This desperation came to a head in 2007. I started to struggle with coping with my diabetes and I felt that I wasn't getting the kind of health care I had become used to living in America. I had just moved home and I wasn't going to be force to pack my bags again just because the healthcare service was letting me down.

I refused to believe that just because things are the way they are; doesn't mean they can't change.

I needed to reach out to someone but I didn't know who. I saw a piece in the local newspaper about a diabetes information meeting that I had been too nervous to attend. I took a deep breath and phoned the number; not knowing who was going to answer. I needn't have worried because I found a friend at the other end. I didn't know the woman who answered but she had type 1 diabetes, was in the same age decade as me and echoed every feeling I had about living with diabetes.

I came to the realisation that the way forward for me was to connect with more just like me and that the way I could do that was to set up a support group. This is how I became an active member of Diabetes Ireland.

The local branch was relatively new at the time and was bursting with ideas on how to provide support and information to all people with diabetes. I took it upon myself to make sure that those ideas didn't fall into a big black hole. I reminded the others of what they had volunteered to do and I gradually began to step more and more out of my comfort zone to expand it.

In 2007, fear of rejection meant I didn't like calling strangers on the telephone, especially health care professionals, who wouldn't be expecting my call, about what we're were trying to do but I did it.

Today, I'm a confident person who is not afraid to ask questions no matter who they are directed too. I give presentations to groups of people and I'm not as bad at them as I was in the beginning. Today, it's not unusual for health care professionals to call me asking for information on diabetes events and resources.

The support groups have grown and grown and the feedback we get is that everyone who attends gets something out of it. I'm so proud that they have been sucessful.

The achievement I'm most proud of is the editing of a Type 1 Diabetes guide for adults which was published in March 2012. My previous diabetes voluntary endevours meant that I had become comfortable contacting health care professional to review and ammend this book to ensure the information was relevant to irish people with diabetes. However, when it came to finding a big chunk of "change" to pay for it's printing - that was a new area for me. I found myself talking to regional managing directors of multimillion dollar companies, telling them why this was a excellent investment opportunity!!!

The skills I've developed and the (mostly) confident person I have evolved into today has made be deeply grateful to my diabetes and my one-time desperation of it. And I've found the health care in Ireland that I had become used to when living in America:-)

I wish more people could benefit in the ways that I have. 

P.S. I couldn't have done any of the above if my husband didn't tell that I'd be well able to.

Checklist of “stuff to do” within the first month.

Once you have been discharged from hospital after your diagnosis of type 1 diabetes you are probably wondering what to do next! Well, here’s some help in the form of suggestions from the Starter Kit; a guide for Adults with Type 1 Diabetes. It’s comforting to know that there is a list.

Find out who you can call in an emergency. Your endocrinologist or diabetes nurse specialist might give you their mobile number. Most major public hospitals will have an endocrinologist on call, so you could call and ask for them to be paged. In a serious emergency, call an ambulance. But whatever it is, make sure you have a number in your wallet or programmed into your mobile phone because you can guarantee it will be 3am on a Sunday when you have an urgent dilemma!

 If you have Drivers’ License notify your local Motor taxation office; this is required by law.  The Motor Tax Office will ask you to submit an application for another license, with a GP or specialist’s report and two photos.  A new license will be issued to you at no extra cost.  It will now have a ‘101 restriction’ – all this means is that you will have to submit a medical report when you renew your license on the next occasion – there will be no reference to diabetes on your license.

If you are applying for a drivers’ license for the first time or renewing, your GP or specialist will fill in a medical form which accompanies your application. Essentially what they’re looking for is that you haven’t had a bad hypo (low blood sugar) recently and you get heaps of warning symptoms when one’s coming along - so the doctor basically needs to write ‘no hypoglycaemia unawareness’ in the comments section.

Notify your car insurance company as soon as you can after you have been diagnosed. Don’t worry they cannot increase your insurance premium because of your diabetes unless they can show that you, as an individual, are more at risk than you were prior to your diagnosis, which is virtually impossible. However, if you do not inform them that you have diabetes and you do make a claim the insurer can invalidate your cover.

You can also talk to Diabetes Ireland about this and other insurance cover such as mortgage, mortgage protection and travel insurance.

Get a Long Term Illness (LTI) Book or a GP visit card. Usually, this process has been started for you while you are in hospital but just in case. If you do not have a medical card then you are entitled to a LTI book, which provides all of your diabetes medication and supplies free of charge. You can get an application form from your local health office or your GP, it needs to be completed by you and your doctor and must be returned to your local health office.

During 2012, people who claim free drugs under the Long Term Illness Scheme will  have free GP care. The details for this have not been finalized. Diabetes Ireland will make an announcement when this benefit is available. Watch their website for details.

If you have medical card you are entitled to free GP visits and hospital care, free medication, pens/syringes, lancets and glucose monitoring strips. Most people have to have income below certain limits but if an individual is near the limit and has on-going medical expenses it may be granted. Apply through your community welfare officer at your local health centre.

Work out what sort of hypo supplies work best for you. Some useful places to have some sort of sugar available:

• Glove box of car;

• In your handbag/backpack, or back pocket if going out;

• Desk drawer or locker at work;

• School locker or pencil case;

• Beside your bed;

• At your boyfriend/girlfriend/best mate’s house.

Don’t worry - You are not going to use all these supplies in the first week, it’s just that you can generally guarantee that a ‘hypo’ (especially your first) will take you by surprise and happen when you least expect it.

Blood Glucose Meter. Find one that works for you! (Note: a search on the Internet is likely to also showcase monitors that are only available in the US and Europe). This thing is going to have to go EVERYWHERE with you so choose one that you reckon is easy to use and not too ugly.  They are free and you can usually get them directly from the manufacturer or from your Diabetes Nurse Specialist.

Are you going to be sitting exams this year? If so, make contact with the appropriate person at your education institution and inquire about ‘Special Conditions’ such as being allowed to take in food, for your exam. You should be entitled to these so organise it now as it’s the last thing you want to be worrying about in the lead-up to the exams. If you are a student who is filling out a CAO form you should note that you may be eligible for the Disability Access Route to Education (DARE). You will find more information on this on and

Get yourself a medical alert ID. This helps emergency personnel treat you appropriately should the need arise. If this totally freaks you out, there are a couple of other options, (though a well-known bracelet like Medic alert is the most easily recognisable symbol if you get into trouble). Engrave a piece of jewellery you wear all the time with something like ‘Diabetes on Insulin’. Carry a card in your wallet (available if you become a member of Diabetes Ireland). At the very least, this is the kind of thing that relaxes our stressed-out mammy’s!

Words of wisdom on diagnosis.

It’s been many a year since I was diagnosed as a young one with type 1 diabetes and over the years I have heard some valuable advice that I wish I had been told when I was diagnosed that would have caused me less stress.

I’m taking an excerpt from the Irish version of the Starter Kit; a guide for adults with type 1 diabetes in the hope that people today who are newly diagnosed will be saved the stress and that this information will help the find the path to “I can do this diabetes thing!”.

top 10 things we wish someone told us the day we were diagnosed:

1.    It’s not your fault.

Type 1 diabetes is an autoimmune condition. Something goes whacky and your immune system gets confused. It gets this idea in its head that the very precious islet cells in your pancreas that produce insulin are actually a virus and it turns on them and kills them. We don’t know exactly why. But we do know that it has absolutely nothing to do with what you ate, where you live, who you are or whether your mam stood on her head during pregnancy. There is a genetic link but it’s only one piece of the puzzle - even if your mam or dad had Type 1 diabetes themselves, there’s only about a 5% chance you’d have got it.

2.    You’re not a freak!

Getting Type 1 diabetes when you’re in your 20’s, 30’s, 40’s or even 60’s is way more common than most people (including doctors and nurses) realize. Type 1 was called juvenile diabetes for many years which was misleading. So if someone says “ooohhhhh you’re old to get Type 1!” You’re not alone, and they’re wrong! Half of people with Type 1 diabetes are diagnosed as adults.

3.    You’re not alone.

20,000 people in Ireland have Type 1 Diabetes and with the popularity of the internet and social networking sites such as FaceBook and Twitter you should not at all feel isolated. There are support groups for adults with Type 1 Diabetes starting up all over Ireland. Diabetes Ireland would have contact details to find out if there is a group near you, they also offer support and information to people with diabetes through their website <www.diabetes.ie> or their helpline 1850 909 909.

And there’s this group of young adults in Australia   called Reality Check <www.realitycheck.org.au>. Their website has a forum where you can post any question, read other people’s experiences and really tap into what it’s like to live with diabetes and what real, normal people do.

4.    Insulin is not like taking a pill each day.

You’ll learn how to change the doses, sometimes every day or every hour, to cater for different things going on. But it’s definitely not a case of here’s your insulin, take X units, go home and you’re on your own. Pretty soon you’ll start to get the hang of balancing your insulin dose with how you eat, drink and play - which changes every day, of course.

5.    It’s bloody hard work at first but not the end of the world.

People with Type 1 diabetes have won gold medals (Gary Hall Jnr in the US and Steve Redgrave in the UK), play professional football (Gary Mabbutt), won Oscars (Halle Berry), sung to thousands of people (Marcia Hines, Nick Jonas) and even won Miss America competitions (Nicole Johnson). We’ve backpacked the farthest corners of the world, got awesome jobs, become millionaires and politicians. And then there are the rest of us normal people who go about our lives doing what we want and making diabetes fit in there. You’ll be grand!

6.    It’s actually impossible to keep blood sugars between 4 and 8 all the time.

Really truly! Those numbers were given to you as a guide and the aim of the game is to keep them there. However, until you get yourself a new pancreas, it is just impossible to not get the odd high or low (or lots of them on a bad day.) Highs and lows make you feel crappy enough without you feeling guilty that you’ve stuffed up too. A good tip is to just think of the number that pops up on your blood glucose meter (a.k.a. the blood test lottery) as a Call to Action: if it’s high or low, just do what you need to do, to fix it. But don’t waste your energy thinking, ‘Oh I’m bad, I’m wrong, I’m crap.’ Just fix it and get on with life. (Or if you’re not sure what to do, phone your diabetes team for some help.)

7.    Research is moving ahead at an amazing pace.

You’ll hear a lot about ‘the cure’ for diabetes and while it’s still a little way off, the word on the street is that research has made more progress in the last 5 years, than in the 20 before that. We’re seeing it with better technology and developments all the time. Chat to someone who had diabetes in the 1950s if you want to feel better about your lot - scary glass syringes etc., not good, not good. The JDRF (Juvenile Diabetes ResearchFoundation) website is a good source of news on research developments.

8.    People say really dumb stuff.

You will find that everyone you meet now has an Aunt who had diabetes and either had some amazing home brewed solution to cure it, or died. Just brace yourself that people get weird when they don’t know what to say. We’ve all had times when we want to punch a person who doesn’t have diabetes. It’s the kind of thing you really can’t totally understand unless you’ve got it. So start perfecting your ah-huh, patient nodding and fast exit. (We’ve also included a couple of copies of a one-pager here that you can give to friends and family to save you turning into a broken record.)

9.    Diabetic Chocolate is not an alternative for people with diabetes.

I know that’s a shocker! People assume that if the label says ‘diabetic’ that the contents may be beneficial. Since ‘diabetic’ foods tend to cost more than conventional counterparts or sugar-free and reduced sugar versions this is in effect conning people with diabetes. Diabetic Chocolate – “is sweetened with alcohol sugars, which can cause fluid to build up in your bowels, which can then cause diarrhoea” (Margot Brennan, consultant dietician at the Auburn Medical Centre, Dublin).

Go for normal chocolate in moderation and save yourself the pain!

10.    Pepsi MAX is the best sugar-free coke. Diet Coke's pretty good too. 

The Starter Kit is available for free  to download from http://www.diabetes.ie/wp-content/uploads/2012/02/T1-Starter-Kit.pdf or by contacting Diabetes Ireland on LoCall 1850 909 909 and email info@diabetes.ie

Type 1 Diabetes Research Development Meeting

We have been hearing a lot about the Artificial Pancreas project lately in the diabetes news and I have to say when I read in the latest issue of Discovery, the JDRF's quarterly magazine that it had been tested in a non-hospital setting with good results I got very excited. 

If you are at all interested or even just want to know a bit more about what kind of research is going on in the world that might make like with diabetes easier then this is the event for you.

 

Diabetes Ireland Research Alliance (DIRA) in association with Juvenile Diabetes Research Foundation (JDRF) presents:

Type 1 Diabetes Research Development Meeting

Global Type 1 diabetes research is moving at such a pace that it is bringing renewed optimism of finding a cure to families living with Type 1 diabetes. Recent advances in the areas such as the artificial pancreas and stem cell research give cause for such optimism.

DIRA, which is a subsidiary group of Diabetes Ireland, is inviting the public to come along to a Type 1 Diabetes Research Development meeting in The Greenhills Hotel, Limerick on Tuesday 27th March at 7:30pm and hear from the experts on the latest cutting edge Type1 diabetes research and how to help find the cure.

Type 1 diabetes is an auto-immune disease and tends to occur in childhood or early adult life. It always requires treatment with insulin therapy. It is caused by the body’s own immune system destroying the insulin-making cells (beta-cells) of the pancreas. It is not caused by lifestyle choices and cannot be prevented or cured. There are approximately 300 children and adults with type 1 diabetes living in Co. Clare.

Cambridge University Researcher, Janet Allen, who is working on the Artificial Pancreas Project, will be among the speakers. The Artificial Pancreas project focuses on developing an artificial pancreas system which hopes to solve one particular aspect of living with type 1 diabetes – controlling glucose levels overnight. The team at Cambridge are developing a system that would be able to take over managing insulin delivery at bedtime and will keep the glucose levels in check until the patient wakes up in the morning. They are also working towards getting a system ready for families to test out at home.

Research communication officer with JDRF, Maebh Kelly, will give an update on “cutting edge” research developments in diabetes and in particular the Diabetes - Genes, Autoimmunity and Prevention (D-GAP) project. This project is trying to identify and understand how and why Type 1 diabetes. If they can confirm this link, this research will pave the way for further developments aimed at preventing or reversing type 1 diabetes.

We will also hear from Emma Warrington, a parent of a child with diabetes on why she and her family got involved with the D-GAP project.

My Type 1 Support Group.

This week, I thought I would just give you a couple of lines about the Type 1 Support group that I am part of.

We meet every month in Ennis, Co. Clare and there are usually about 6 of us. Six is a nice number; it means we can relax a bit and really talk about what’s bothering us in our diabetic lives.

Last night, we meet in the Temple Gate Hotel and there were 4 of us. There was myself, who has had type 1 for almost 19 years, a lady who has grown up children and has type 1 for about 20 years, another lady who’s 12 year old has had type 1 for 4 years and another lady who has had type 1 for 46 years.  Even though we were from different stages of live and we were diagnosed at different ages; we all had something in common.

This group has been a huge source of strength to me as I face the everyday “challenges” in living with diabetes and also a great source of local information. Through this group I have learned about the choices I have in terms of medical care and I’ve picked up quite a few tips and techniques that others use to improve their diabetes management.

Another benefit to being part of this support group is that you don’t have to translate the lingo; you can talk about hypos, hypers, HbA1c’s, etc. without having to explain what each word means.  This makes for a very relaxed conversation.

All in all I’ve had a positive experience with my group and I would encourage others to reach out and try and find a group in your area. I know there are type 1 groups in Dublin, Cork & Sligo; Diabetes Ireland would have more information about if there are other types of diabetes support groups in your area.

I had been living with type 1 for 8 years before I met another person just like me. It was only then that I realised I didn’t have to live with this by myself and I didn’t have to feel this isolation. It was like walking into a warm room from a draughty hallway.

Diabetes and Pregnancy

This season of RTE’s OperationTransformation  has been focusing on type 2 diabetes in a big way. This is my first time to watch Operation Transformation and I find it a very interesting programme though not why you would think.

I was extremely interested in the piece about how unfit our school aged teenagers are, especially the girls. That was eye opening but when I thought about it not surprising.

However, it’s the feature on Petrice, which aired on Wednesday, 8th February, that inspired be to write this blog entry. Petrice was overweight and always figured that when she decided to start a family she would get in shape first. However, the best laid plans….. And got pregnant un-expectantly. During her pregnancy she developed gestational diabetes.

I have type 1 diabetes and had it before I started my family. My diabetes played a huge factor in deciding if I was going to have a family and really made me focus on what I had to do to prepare my body for developing a healthy baby. I had 10 years to learn as much as I could about diabetes before I started my family – imagine finding out all the scary things about diabetes and pregnancy after the fact! I felt for Petrice and how she was trying to cope with having diabetes and then think about how it was affecting her baby.

I started to think back to how I felt during both of my pregnancies. My first pregnancy went smoothly and resulted in a healthy baby (TG). It was really hard work; constant testing of blood sugars, lots of doctor’s appointments, faxing in by blood glucose diary weekly, accounting for every morsel of carbohydrate, feeding lows all the time and living in fear of the highs.

My second pregnancy happened just after our transatlantic move and my body was stressed, I was a little overweight and I had a two year old to take care of. I still put in all of the work and thankfully the result was another healthy (if not very large) baby (TG again).

Each time I was pregnant I had the same anxiety but tried to push it to the back of my mind and focus on nurturing a healthy baby. It’s amazing how this growing life makes you take better care of yourself and work twice as hard at managing your diabetes well without grumbling.

It’s like competing in a long distance race; you just want to get over the finish line. Your first question in the delivery room is not “Is it a boy or a girl?” but “Is everything where it should be and does s/he look healthy?”

Diabetes never lets you take a healthy baby for granted.